“Hello. My name is Yvonne Brown. I do not see at myself as a victim of multiple sclerosis but rather an MS survivor. However, I do feel like a victim of the system and I’d like to share with you what my life has been like since being diagnosed with MS and my experiences applying for SSDI (Social Security Disability Insurance).”
Thus began Yvonne’s testimony in Washington to the Social Security Administration (SSA), where she asked them to extend the Compassionate Allowances Program to people with advanced autoimmune diseases in order to allow their applications to be processed more quickly.
Her story included this: By the time Yvonne, now 49, was diagnosed in 2001, she had lost a high-paying job and ended up losing her house, as well. She currently lives in a shelter, out of her storage space and car, and at friends’ houses. “I’m surviving on the generosity of friends,” she says. “When I’m out of friends, I’m out of options.”
Yvonne has testified a dozen or more times on different issues. She’s been successful in seeing that additional money was dedicated to stem-cell research and in supporting a bill to cap the amount a person can be charged out of pocket for prescriptions.
“Every time I speak or advocate for MS issues, there’s a chance I can impact change,” she says. “That’s why I will always accept the invitation to share my story.”
Thanks to Yvonne’s presentation, as well as the hard work of many MS activists, an aggressive form of MS was added to the Compassionate Allowances List. “I remember the doctor I was sitting next to turned and looked at me, teary-eyed,” Yvonne says. “Another person said, ‘When you move someone to tears, you’ve had an impact, you’ve gotten your message across.’ My advocacy has helped put MS on the Social Security map. It was my opportunity to right the system.”
Learn more about legislative issues that affect people with MS.
Learn more about African Americans and MS.